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INTERVIEW recorded on 10th December 2020
Interviewer:听听 听 Geerte Slappendel
Interviewees:听听 听Professor Dr. Matthias Rose and Dr. Rebecca Schrank from Charit茅, Berlin
Geerte:
Welcome to what we hope will be the first of a series of CONVINCE videos and interviews. 听CONVINCE (you see the logo here) is a study comparing Haemodialysis (HD) to Haemodiafiltration (HDF) which is funded by the EU.听 This is a study that mostly includes a lot of nephrologists and statisticians, but the people I am interviewing today are neither. 听These are Rebecca Schrank and Matthias Rose from Charit茅 in Berlin.听 Could I ask you to tell me a bit about yourself and what you are doing within CONVINCE?
Matthias:
Rebecca, do you want to go first?
Rebecca:听听 听
I will introduce myself quickly. 听I am Rebecca Schrank from Berlin. 听 I am a physician still in training and have a clinical fellowship in psychosomatic medicine.
Matthias: 听听 听
I am Matthias Rose. 听I trained as an internal medicine doctor many years ago, and have a qualification for psychosomatic medicine, so I am also a psychotherapist. The reason I鈥檓 here on the CONVINCE project is that I am working with the development of patient reported outcome measures or any kind of patient self-reported health information for the past 20 years in different initiatives.听
Geerte: 听听 听
So how is that taking shape within CONVINCE? 听 What is it that you have implemented here?
Matthias: 听听 听
Well, I think this is a good move from the more disease oriented medicine to a more patient oriented medicine, or patient-centred medicine. I am very happy that the PIs [principal investigators] of the CONVINCE consortium approached us to say we are doing a very good job to prolong life and the technical job here to answer a very important question: which is the better dialysis type to prolong life, but it is also very important clearly for patients with a condition like chronic kidney failure or other chronic diseases how they are doing. 听So what is their quality of life or what are their symptoms. How the technical advances, which we have in medicine, are affecting the patient. So the patient perspective is equally important than just to prolong life. It is also important to have a healthy life and once you say this obviously and you want to transfer this in a kind of scientific based means, empirical based world, then you have to have an assessment from the patient itself as to how they feel. And this is basically what we are doing at the CONVINCE trial - to really push the envelope a little bit, to have a high methodology, high good state-of-the-arts way to approach the people and to ask them a very simple question as to how they feel. We are doing this using very advanced psychometric methods.听
Geerte: 听听 听
We have some people on the trial who are very excited about the 鈥減rems and proms鈥� [patient-reported experience measures and patient-reported outcome measures] I believe they鈥檙e called. 听What is the new and different thing about that?
Rebecca:听 听
New and different compared to? 听When they were not existing?
Geerte: 听听听 听
Yes
Rebecca: 听听 听
Matthias has already explained a bit 鈥� it鈥檚 about not only making decisions during treatment, during medical conditions, not only based on laboratory results for example, but also on the 鈥減rems and proms鈥� which is short for 鈥減atient report outcome measurement鈥� so we are trying to make visible, measurable or verifiable how a person feels and make a decision concerning the treatment also based on this measurement reported by the patient.
Matthias:听听 听
I think the important thing is that once you introduce this as a laboratory result, like a potassium level or a HB level in the clinical idea all the healthcare providers like nurses and physicians who are doing this they have started with the idea to help the patients and what we lost a little over the past couple of hundred years when we focussed on empirical based medicine, which is a good thing because we have been successful to extend life, we lost a little bit the idea to measure or to observe our success based on what the patient has experienced. 听Of course we do this on a day-to-day basis. We are asking our patients, which is the most natural thing as physicians, but to have this included in the EHR (Electronic Health Records) system like a laboratory result I think will change the way we are thinking. We will focus our treatments because you identify the people who are not doing well, although probably the objective findings are well, so you might have a kind of an indicator when we are doing this right now, like for example, the time to recovery we are very precise in this, in how long does it take and how to observe the way the pattern how the patient recovers after the dialysis treatment, so we are really advancing the techniques here also from the psychometric field because of the scientific project. How to measure fatigue for example. 听Fatigue is one of the main outcomes of physical functioning and we know that physical functioning on the other way is determining the mortality rate, so to know what the patient knows, how he is doing, how he is assessing himself, his physical health status, it is also very informative who is at the most risk for the duration of the treatment. 听We have seen this with cancer, it will be the same with nephrology also. So there is very easy information right in front of your hands, basically asking the patient how you are 鈥� you just have to do it in a good way. 听We are using new techniques to do this and I am happy to talk about this more. 听The idea is very simple. 听The idea is: get the patient鈥檚 voice, form the clinical decisions, know how successful you are from the patient perspective.
This is pretty new. It sounds kind of funny that it is new, but in fact it is. It is new when you do this in a kind of very rigid way. We are trying to do this in the CONVINCE trial.
Geerte: 听听 听
It is actually very interesting for me coming from a Social Sciences background where this is actually how you do your work. 听So the idea of this being 鈥榥ew鈥� is less obvious to me than it would be to someone from the medical world.听
So, are you already within the CONVINCE study, actually feeding this back to the doctors involved and to the medical staff?听
Matthias: 听听 听
Well, at the moment we are not doing this. We have different ways to approach this with the software. 听We have other studies running where it is an intervention in RCT or a little bit more cautious to feed any kind of information which might change the outcome back to the physicians, so we have tighter restrictions here so it is a randomised controlled trial, end of discussion trial, so we have to be, unfortunately, a little bit cautious to feedback any information which might influence the treatment. 听That鈥檚 the reason we don鈥檛 feed it back here, but after the trial is ready we are ready from the software to feed it back that it becomes an integral part of those kind of treatments. 听And this is obviously the goal 鈥� we don鈥檛 want to do it just for the study, we want to do it that the patient perspective becomes the most natural thing to manage your treatment with. 听And it could also be that you have an indication where somebody, for example, is suffering from an additional disease, like depression. 听You are in an end-of-life situation 鈥� it is a life-threatening condition, so it is not so unlikely that you have adjustment disorders. In the usual care, sometimes that goes overseen, so there is a very easy way to assess this and what we are doing with, for example, depression, so many people are doing fine and some of them don鈥檛, and we know this from their primary care field. 听We did some studies in the Bronx where we identified that only half of the people having a depression are known to the physicians. 听So, I am very excited if we see that they are here, that the level of co-mobilities which will be identified and probably not treated. 听We can go into the medical files to see if we oversee something by focussing on just one organ, which is the kidney, but we want to treat the person. 听So this is kind of the old, well, it is a success story that we started in 1820 to say we have been living only 40 years on average, and now we are living on average 80 years, so it is a success story to focus on the diseases, but now the next changes is to focus on health. 听So we want to increase the healthy life years, and now we have to re-focus back basically on the patient in empirical based medicine. 听We have to ask the patient how they are feeling and then we can improve our treatments which will probably not focus just on the kidney, which might include social and psychological aspects of treatment, which is the most natural thing you do as a physician anyhow. 听But we want to reintroduce the subject into empirical based or scientific based medicine.听
Geerte: 听听 听
Shifting definitions of health to something beyond physical health.听
Matthias: 听听 听
Absolutely. 听And this is for some areas, of course we are doing psychosomatic medicine and that is not totally new in our field because this is the definition basically of psychosomatic medicine while we include the bio, social aspects but for some of the high advanced technical fields in a way it got in the shadow of the treatment when it looks from empirical based medicine.
Geerte: 听听 听
For CONVINCE, what measures are you hoping to get some answers on? 听You mentioned fatigue, you mentioned depression. 听Are there other things on which you hope to be able to make some statements at the end of the study on 鈥榯his is what happens to patients鈥�, 鈥榯his is what patients experience鈥�?听
Rebecca: 听听 听
The physical function already got mentioned as well. 听We are trying to see a correlation between objectifying it and fine-measuring it with a physical performance test and relating this physical performance test to the report the patient is giving, like how they are feeling, or are they able to use their body in day-to-day activity. 听 And also how they are being active and able to manage their daily life and their family demands, emotional and physical wellbeing as well.
Matthias: 听听
Basically, we have as Rebecca just mentioned, we are focussing on some kind of key domains which are fatigue and physical functions, which we call proximal outcomes, because they are very much related to the nephrological functioning but we also try to understand the more distal outcomes which are the effect on your social integration for example, on your recovering, in your social daily life 听function, so we will have some kind of immediate effect where we spend a lot of effort to do this very precise for example physical function, as Rebecca just mentioned, we have a very simple test, an objective test so to say like can you walk a couple of stairs, can you pick up something, or can you lift a weight and then the experience of physical functioning which is a different thing, but also some of the distal things like how you can perform your social activities, what is your social life.
So basically, we always, when we deal with chronic conditions, and this is kind of a poster child for chronic conditions - kidney failure is - we want to assess the physical state of health from the patient perspective, of course also from the biological assessment of what we do as physicians, and from the experience which could be different 鈥� what you experience is not what the physician might think you feel; from the mental health status and social health status. 听These are the three pillars from which we focus on and which we are using 鈥� a measurement system in which the US has invested a lot of money because they have seen that we need to move to a standardisation of those assessments, which is called the patient report outcome information system which has received a lot of funding in the US.听
Geerte: 听听 听
As a final question, within CONVINCE when would you consider for your work CONVINCE to be a success?
Rebecca: 听听 听
Well, when we see that the implementation of the questionnaires that were handed out to the patients and the 鈥減roms and prems鈥� that we are getting out of them, when we see that they have an impact on decision making and treatment and for example detecting when the treatment is not going as it is supposed to go and not only due to laboratory results, for example.
Matthias:听听 听
I can only echo what Rebecca just said. 听I think we do have some kind of immediate effects that we can say as kind of a very important outcome is one way to deliver the data is better than the other. 听This is what SCT is about - whether we can prolong life with HDF compared to HF. But here we can say we will have a definite answer to say is the quality of life with all the aspects we just mentioned better for one type of dialysis than for the other. 听So we will have an answer to this 鈥� which is totally new, so we will have a very solid 鈥�. 听I have been in some studies, but not on the scale which we are doing right now. 听So that is the immediate answer for the SCT.
And then we have the much broader, obviously the hidden agenda (which is not so hidden) which Rebecca just mentioned is, once we do this and we get published and raise awareness we hope for much more that it becomes an integrated part of every kind of treatment for chronic kidney failure patients because it shifts the way we do medicine. Sometimes they say it鈥檚 a Trojan horse but what we think of a different way we do medicine, and how we measure our success.
Geerte:听听 听
I think that鈥檚 a great long term goal to work for. 听I hope we can indeed contribute to that and I actually plan to have a lot more conversations on that topic over the next months. 听Thank you both so very much for your time. 听Thank you.
Matthias: 听听
Thank you for all your effort to make this project a success. Without you it wouldn鈥檛 work. 听Thanks.
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